" HOW CAN I HELP SOMEONE WITH LUPUS" SLE
A blog dedicated to those who have family members/friends who battle diseases specifically LUPUS
I'm sure if you are reading this you probably can think of at least someone who cross your mind who has been diagnosed with lupus. Lupus is an Auto immune disease causing the body to attack itself. In other words the body is confused. Its no longer able to tell the difference between bad antibodies from the good ones, So unfortunately it automatically will attack itself damaging organs such as the kidneys, Liver, Heart and so much more. This disease causes severe inflammation in the joints causing chronic excruciating pain in some instances. All individuals with lupus are different meaning the disease can and will effect many differently, Some people cannot function some are functional at a limited level trying to live a normal life. Their are four types of lupus some more common than others. However the one that I am focusing on is the most common one which is Systemic Lupus Erythematous (SLE)
This form of lupus is the one that most times have organ involvement. This is the form of lupus I was diagnosed with over 23 years ago at age 19 I'm now 44yrs old.
Lupus can be severe, mild and some may be more blessed enough to not have any symptoms at all because of perhaps medication intake or that the disease is in remission, which many with lupus wish for. Their is no cure as of yet for lupus so this is why remission is so important to us.. Even though lupus effects us differently their are a few complaints we all have in common like chronic pain, which can be daily, Chronic fatigue, The emotional and mental health impact that the illness has on our minds. We sometimes have difficulty with memory and many of us have limitations that we never had before. I say all that to say this. It's so important if you know someone with lupus the importance of your support. Now im going to break a few things down for you.
let's first touch on the fact that most who visit this page or read this don't know much about lupus and perhaps you have a family member with it or friend and would like to know how you can better be a support to them. I am also sure if you have someone close to you, sometimes you get annoyed by the fact they are always complaining about pain, always sick, always saying they so tired, always standing you and friends up because they claim to be so tired. You may have even felt that they were exaggerating saying" come on no one is always that tired or in pain all the time like that." Well knowledge is power and what you don't know you simply do not know. I can vouch for all the above and can in most cases guarantee that their is no exaggeration.
CHRONIC FATIGUE: The body for a person with lupus can never get enough rest. We tire easy, we get exhausted really fast, sometimes we wake up so tired that we cannot function. Guess what? This is all unpredictable. Lupus isn't consistent you never know when flares will hit you. Flares are in between times when the disease becomes more active than normal. However being unpredictable is an understatement. Most times we cannot even plan to do anything because we don't know how we will feel one day to the next. Now normally many can say that but in a person with lupus we have up and down risk factors of so many different feelings, day to day that causes dysfunction in our ability to sometimes be mobile or even use our limbs to just being chronically tired. Planning ahead can be a nightmare. So when someone you know expresses how tired they are please believe them and try to comfort them with words of encouragement. No one wants to hear you say "Don't lay in that bed to much just get up!, or you just lazy. I get so furious when I hear people tell me some of the comments that are made by ignorant people.. But I have to remember if something is foreign its criticized because their is no knowledge what so ever about it. Just like lupus if you don't take the time to research this disease you will never understand what a person with lupus go through from day to day. The fight is mentally draining this is why we need people to support us on our good and bad days.
A support system isn't a person or group of people who we need at our beck and call. I'm sure many dread that because none of us wants to be co dependent. However it's just being a true friend. A friend that will listen, If not understanding our situation but be eager to learn so that when the crisis strikes you know how to just be their. Support systems comes from many types of organizations to groups and individuals. I find many have Facebook groups who are total strangers who are their support system because they don't get it at home.
Chronic Fatigue Syndrome: Chronic fatigue syndrome is not just being tired daily or all the time. The fact of the matter is many are so run down and exhausted that it totally interferes with their lives and their overall responsibilities. CFS makes it totally a challenge to function at all. This becomes a problem at home and on the job. You cannot even imagine if you don't go through this. Most with lupus may not have this diagnosis of CFS but to give an idea of what it looks like this is it. When and if diagnosed with CFS some may become disabled or bed ridden. What I will tell you which is a fact with chronic fatigue found in lupus patients, doctors don't know why and don't have a clue how to give us any relief. So in other words we suffer unless we figure out a way to cope and get relief from another source. So the next time you hear someone talk about someone with lupus being lazy, or complain about they cannot do this or do that, then you really need to educate them on what you have learned, and now that you have a understanding of why we sometimes cannot commit to affairs.
Chronic Pain: Ok Chronic pain is pain that is still present long after the initial injury has healed. so just imagine that you hurt your knee and it has a diagnosis of being healed but for some strange reason you continue to have pain daily that sometimes often cripples you as far as being able to do the things you used to do. This is the type of pain most people with lupus have. The pain can be from mild to severe on any given day never the same nor is the pain predictable. From experience I've been in pain so badly that all I could do is cry and moan. we can take pain meds but who wants to be doped up all the time. However sometimes its something that must be done. So I say to all of you please watch your tongue when you tell someone you know with lupus that they are exaggerating. Don't ever say that again after reading this. The pain is excruciation at times. Most people with lupus aren't lazy, exaggerators, fakers they just have to live and cope with a disease that has no cure and in most cases has changed the way they are able to live their lives.
If you know someone with Lupus please get to know them more than you already do. Call and check on them more. If you don't hear from them just call if they come across your mind. Most times if you are thinking about them its time to call and you never know it might just be what they need. People with lupus suffer with major depression. Some more severe than others depending on their stage and or strength with coping. So that's why I encourage you to call them. You never know what you could be helping them overcome in that moment or hour.
Depression causes people to be distant and appear to be anti social. In a since they are but not by choice. That chemical imbalance in their brain causes all types of thoughts like fear, anxiety, not wanting to be around people because they are so down, worried and so much more. this is coming from my personal experience being explained in my own terms so that it can be understood. I'm not speaking as a medical provider in any way just speaking my experience because depression is something I fight every single day of my life. Its even considered a disease itself. So Your family friends or whom ever you have a relationship with battling lupus needs you and your understanding not your criticism. What would help is to began to just read books on lupus or search the internet for what you want to know. Just go to the lupus foundation of America website and just browse. You can learn a lot maybe not in one day but what you will learn is how to help a lupus patient survive and live even if you just are giving emotional support. This is how you can help someone with lupus.
Thanks for reading. Please don't forget to subscribe to this blog and leave me a comment below if this blogged has helped you in anyway or if you have a topic around lupus and the emotional effects it has on the battler and their family and friends. Please follow me go
to www.facebook.com/coachkisha1 on www.twitter.com/coachkishaj or simply google me Kisha Johnson McRae
A blog dedicated to those who have family members/friends who battle diseases specifically LUPUS
I'm sure if you are reading this you probably can think of at least someone who cross your mind who has been diagnosed with lupus. Lupus is an Auto immune disease causing the body to attack itself. In other words the body is confused. Its no longer able to tell the difference between bad antibodies from the good ones, So unfortunately it automatically will attack itself damaging organs such as the kidneys, Liver, Heart and so much more. This disease causes severe inflammation in the joints causing chronic excruciating pain in some instances. All individuals with lupus are different meaning the disease can and will effect many differently, Some people cannot function some are functional at a limited level trying to live a normal life. Their are four types of lupus some more common than others. However the one that I am focusing on is the most common one which is Systemic Lupus Erythematous (SLE)
This form of lupus is the one that most times have organ involvement. This is the form of lupus I was diagnosed with over 23 years ago at age 19 I'm now 44yrs old.
Lupus can be severe, mild and some may be more blessed enough to not have any symptoms at all because of perhaps medication intake or that the disease is in remission, which many with lupus wish for. Their is no cure as of yet for lupus so this is why remission is so important to us.. Even though lupus effects us differently their are a few complaints we all have in common like chronic pain, which can be daily, Chronic fatigue, The emotional and mental health impact that the illness has on our minds. We sometimes have difficulty with memory and many of us have limitations that we never had before. I say all that to say this. It's so important if you know someone with lupus the importance of your support. Now im going to break a few things down for you.
let's first touch on the fact that most who visit this page or read this don't know much about lupus and perhaps you have a family member with it or friend and would like to know how you can better be a support to them. I am also sure if you have someone close to you, sometimes you get annoyed by the fact they are always complaining about pain, always sick, always saying they so tired, always standing you and friends up because they claim to be so tired. You may have even felt that they were exaggerating saying" come on no one is always that tired or in pain all the time like that." Well knowledge is power and what you don't know you simply do not know. I can vouch for all the above and can in most cases guarantee that their is no exaggeration.
CHRONIC FATIGUE: The body for a person with lupus can never get enough rest. We tire easy, we get exhausted really fast, sometimes we wake up so tired that we cannot function. Guess what? This is all unpredictable. Lupus isn't consistent you never know when flares will hit you. Flares are in between times when the disease becomes more active than normal. However being unpredictable is an understatement. Most times we cannot even plan to do anything because we don't know how we will feel one day to the next. Now normally many can say that but in a person with lupus we have up and down risk factors of so many different feelings, day to day that causes dysfunction in our ability to sometimes be mobile or even use our limbs to just being chronically tired. Planning ahead can be a nightmare. So when someone you know expresses how tired they are please believe them and try to comfort them with words of encouragement. No one wants to hear you say "Don't lay in that bed to much just get up!, or you just lazy. I get so furious when I hear people tell me some of the comments that are made by ignorant people.. But I have to remember if something is foreign its criticized because their is no knowledge what so ever about it. Just like lupus if you don't take the time to research this disease you will never understand what a person with lupus go through from day to day. The fight is mentally draining this is why we need people to support us on our good and bad days.
A support system isn't a person or group of people who we need at our beck and call. I'm sure many dread that because none of us wants to be co dependent. However it's just being a true friend. A friend that will listen, If not understanding our situation but be eager to learn so that when the crisis strikes you know how to just be their. Support systems comes from many types of organizations to groups and individuals. I find many have Facebook groups who are total strangers who are their support system because they don't get it at home.
Chronic Fatigue Syndrome: Chronic fatigue syndrome is not just being tired daily or all the time. The fact of the matter is many are so run down and exhausted that it totally interferes with their lives and their overall responsibilities. CFS makes it totally a challenge to function at all. This becomes a problem at home and on the job. You cannot even imagine if you don't go through this. Most with lupus may not have this diagnosis of CFS but to give an idea of what it looks like this is it. When and if diagnosed with CFS some may become disabled or bed ridden. What I will tell you which is a fact with chronic fatigue found in lupus patients, doctors don't know why and don't have a clue how to give us any relief. So in other words we suffer unless we figure out a way to cope and get relief from another source. So the next time you hear someone talk about someone with lupus being lazy, or complain about they cannot do this or do that, then you really need to educate them on what you have learned, and now that you have a understanding of why we sometimes cannot commit to affairs.
Chronic Pain: Ok Chronic pain is pain that is still present long after the initial injury has healed. so just imagine that you hurt your knee and it has a diagnosis of being healed but for some strange reason you continue to have pain daily that sometimes often cripples you as far as being able to do the things you used to do. This is the type of pain most people with lupus have. The pain can be from mild to severe on any given day never the same nor is the pain predictable. From experience I've been in pain so badly that all I could do is cry and moan. we can take pain meds but who wants to be doped up all the time. However sometimes its something that must be done. So I say to all of you please watch your tongue when you tell someone you know with lupus that they are exaggerating. Don't ever say that again after reading this. The pain is excruciation at times. Most people with lupus aren't lazy, exaggerators, fakers they just have to live and cope with a disease that has no cure and in most cases has changed the way they are able to live their lives.
If you know someone with Lupus please get to know them more than you already do. Call and check on them more. If you don't hear from them just call if they come across your mind. Most times if you are thinking about them its time to call and you never know it might just be what they need. People with lupus suffer with major depression. Some more severe than others depending on their stage and or strength with coping. So that's why I encourage you to call them. You never know what you could be helping them overcome in that moment or hour.
Depression causes people to be distant and appear to be anti social. In a since they are but not by choice. That chemical imbalance in their brain causes all types of thoughts like fear, anxiety, not wanting to be around people because they are so down, worried and so much more. this is coming from my personal experience being explained in my own terms so that it can be understood. I'm not speaking as a medical provider in any way just speaking my experience because depression is something I fight every single day of my life. Its even considered a disease itself. So Your family friends or whom ever you have a relationship with battling lupus needs you and your understanding not your criticism. What would help is to began to just read books on lupus or search the internet for what you want to know. Just go to the lupus foundation of America website and just browse. You can learn a lot maybe not in one day but what you will learn is how to help a lupus patient survive and live even if you just are giving emotional support. This is how you can help someone with lupus.
Thanks for reading. Please don't forget to subscribe to this blog and leave me a comment below if this blogged has helped you in anyway or if you have a topic around lupus and the emotional effects it has on the battler and their family and friends. Please follow me go
to www.facebook.com/coachkisha1 on www.twitter.com/coachkishaj or simply google me Kisha Johnson McRae
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